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Science  30 Jan 2015:
Vol. 347, Issue 6221, pp. 498-500
DOI: 10.1126/science.347.6221.498

When new or dangerous infectious diseases strike, public health often trumps personal privacy.

Few things can make you famous—or notorious—as fast as an encounter with the Ebola virus. New York physician Craig Spencer saw his daily life dissected by the media, which noted an evening at a Brooklyn bowling alley, a meal at the Meatball Shop, and rides on the 1, A, and L subway trains. Kaci Hickox, a nurse from Maine, was publicly attacked for defying a quarantine that scientists agreed made little sense. The Daily Mail, a British tabloid, delved into the past of freelance cameraman and Ebola patient Ashoka Mukpo and dug up salacious details about his parents' love life.

Protecting medical information is tricky enough, but when you fall ill during an outbreak of a new or particularly scary disease, everything appears to become fair game. It's not just reporters who pore over your life. Doctors and public health officials, too, want to know where you have been, what you have done, and with whom. The more widely they share any of that information, the greater the risk to your privacy.

A rise in the number of new and reemerging diseases in the past 2 decades—including SARS, MERS, and several influenza subtypes—has brought such problems painfully into focus, and the advent of social media and cell phone cameras has increased the pressure. When ambulance workers clad in white protective suits picked up a man at his home in the Dutch city of Maastricht on 26 October 2014, for instance, “it was on Twitter in 20 minutes,” says George Haringhuizen, a lawyer at the National Institute for Public Health and the Environment in Bilthoven, the Netherlands. Regional health officials were quick to deny claims that Ebola was involved.

Reining in bloggers and Twitter users may not be easy. But even professional efforts to track outbreaks pose new threats to privacy. Information about specific patients—although anonymized—is now shared worldwide on public e-mail lists for emerging diseases such as ProMED, which often recirculates newspaper stories from around the world. Although it always redacts patient names, says ProMED Editor Larry Madoff, a simple Google search is enough to find the original story with those names.

IMAGE: WILLIAM DUKE

There is a growing need for global ethical standards for governmental disease surveillance, akin to what the Declaration of Helsinki provides for medical research, says Amy Fairchild, a historian at Columbia University who studies public health policy. Fairchild co-chairs a group of ethicists and public health experts assembled by the World Health Organization (WHO) to make recommendations on the subject; privacy will be a key issue, she says.

UNTIL THE 1960S, major U.S. newspapers routinely printed the names and addresses of people with infectious diseases such as polio, Fairchild says. It wasn't until the 1970s, when governments and other organizations began storing large amounts of electronic data on citizens, including medical records, that privacy emerged as a political issue. Heart-wrenching cases of stigmatization and discrimination against AIDS patients in the 1980s—which led many to hide their HIV status—galvanized support for the protection of medical privacy.

Many countries now have complex laws and regulations governing how and when medical information can be shared, such as the Privacy Rule of the U.S. Health Insurance Portability and Accountability Act, passed in 1996. Yet there still is a “huge tension” between the worlds of clinical care—where doctors try to protect individual patients—and public health, which tries to protect communities, says bioethicist Arthur Caplan of New York University's Langone Medical Center in New York City—especially during disease outbreaks. “Privacy doesn't fit well in the mindset of people in public health,” he says. “For them, the question is: How much can I get away with without privacy going completely out of the window?”

Disease detectives at the U.S. Centers for Disease Control and Prevention, for instance, can't track down a mysterious outbreak without having as much information about the patients as possible. At the same time, governments can't know if public health policies work without gathering detailed data about disease incidence.

But because of privacy concerns, doctors sometimes don't comply with requirements to notify health authorities when they diagnose a patient with a reportable disease, of which there are about a hundred in the United States. A qualitative study conducted in Canada at the height of the 2009 influenza pandemic showed that some doctors were surprisingly reluctant to report patients with flulike symptoms, as they were supposed to. “I think the bottom line for most family physicians is we will not share names, addresses, or phone numbers, period, without individual patient consent,” one said in a focus group.

There are debates about how reported data can be used as well. New York state, for example, requires doctors not only to report HIV diagnoses, but also to forward lab results such as viral loads and CD4 cell counts. When such reports stop coming in for a given patient, researchers say, it's a sign they may have dropped out of treatment, which could help the virus rebound and put sex partners at risk. A 2013 study showed that of 409 dropouts, 57% were brought back into care after they had been traced and contacted—but some believe that's crossing a line.

EVEN WHEN DOCTORS or government agencies treat health data discreetly, patient identities often become known—in their neighborhoods, towns, or in the press. When federal agents go around the block to trace the contacts of an Ebola patient, it's usually not hard to find out who the patient is. Europe's very first AIDS patient, who died in 1976, was long known as “the Norwegian sailor,” and later by an anagram of his real name, used in Edward Hooper's book The River—until journalists revealed his name around a decade ago. (The man is believed to have picked up HIV in West Africa in the early 1960s; his wife and one of his two daughters succumbed to AIDS as well.) The case still upsets Stig Frøland, a researcher at the Rikshospitalet in Oslo who published about the family and says he tried hard to protect their identity. Still, Frøland isn't surprised, “in view of my experience with the very aggressive attitude from national and international media through the years.”

Craig Spencer's identity was revealed by the press, too. (A Twitter search suggests the New York Post identified Spencer first, 8 hours after his hospitalization, simply citing “sources,” followed shortly after by the New York Daily News.) The details that the health department subsequently made public about Spencer's movements before he fell ill were a clear invasion of his privacy, Fairchild says—and an unwarranted one, because he didn't have symptoms at the time and wasn't infectious. (Spencer, who asked the media to respect his right to privacy after he recovered, did not respond to requests for comment.)

Mukpo, by contrast, agreed that his name could be released after he got Ebola, in part hoping it might help get him repatriated from Liberia, where he became infected. “Honestly, though,” he adds, “me remaining anonymous would never have been a realistic option,” given that he worked for NBC and knew many journalists.

The upcoming WHO report, expected in 2016, will come up with recommendations for disease surveillance in general, not just for infectious diseases. But the panel may well borrow some pages from a similar WHO report, published in 2013, on the ethics of HIV surveillance, which remains an extremely sensitive issue today. That document recommended that the names of HIV patients be reported only for public health purposes—not for discrimination or criminalization—and only when confidentiality of the data is assured. It also said that people's right not to participate in surveillance should be respected as much as possible.

The tension between privacy and public health will always remain, Caplan says, but preventing stigmatization and other negative consequences could help relieve some of the worries. “If you're not going to lose your job, lose your house, lose your mate, there's less reason to worry about your privacy,” he says. And eventually, he says, people may care less than they do today about whether officials track their movements and contacts. Young people already share massive amounts of information online—including where they are, what they're doing, and who they're with. (“When I ask them if they aren't worried about their privacy, I get a condescending look,” Caplan says.) Medical privacy, too, will become a “quaint notion,” Caplan predicts.

For Mukpo—who noted the irony when Science e-mailed him to ask questions about his privacy—the exposure was actually a mixed experience. Although it was “very disconcerting to become such a public figure so quickly,” he did use the media spotlight to raise awareness about the Ebola situation in Africa. What's more, “the publicity also was an opportunity to see just how many amazing people I have in my life,” he adds. “The outpouring of concern was humbling.”

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